Family takes aim at disease

Second annual fund raiser will include sport clay shooting ANDOVER — Choosing to focus their energy in a positive direction after the loss of their daughter Elise to Tay-Sachs Disease (TSD), John and Laurie Ten Berge, have worked hard over the last year while mourning, moving forward, helping other families and raising money for research. “Losing our daughter at the age of 6 was terrible, but over the past year we have learned to try to do everyday things without focusing on that loss every second” John said. TSD is a deadly genetic disorder. For infantile TSD to occur, each of the two parents must pass along a mutated gene upon conception, which results in the baby lacking vital enzymes allowing for dangerous amounts of fatty material to accumulate in the brain’s nerve cells, resulting in a damaged nervous system. Mental and physical abilities deteriorate over time, leading to death, usually by the age of 5. “A cure for this disease is really possible”, said John. According to the Cure Tay-Sachs Foundation website, www.curetay-sachs.org, regarding treatment and a possible cure, “research continues to make outstanding progress in animal models” and that researchers are “pushing towards clinical trials now.” Money seems to be the largest obstacle considering an approved clinical trial could cost $2 million for Phase I and Phase II according to the site. “That is why I am so excited about the second annual event we have organized to be held at Hudson Farms on Oct. 21, which we have named “Shoot at Tay-Sachs.” The event cost $350 and includes lunch, dinner, 20 shooting stations with sporting clay targets and 100 rounds of ammo. Dinner, drinks, awards and an auction will take place after the shoot. All proceeds benefit the Cure Tay-Sachs Foundation.“This event is open to everyone, even if someone does not know how it shoot. “We had people last year who had never shot before and they were teamed up with instructors who taught them throughout the course.” Of Elise, John said “It was very difficult to lose Elise to TSD, but through these efforts Elise can be part of the cure.” Elise seemed to be the perfect baby for about six months, even though she did not hit the usual milestones. The doctors told the family not to worry and that all children develop at their own pace. As time went on it became more apparent that there was a serious problem. After exploring several avenues in an attempt to understand what was happening, a 10 minute exam with a pediatric neurologist at Columbia University Hospital, a classic case of TSD was diagnosed. The Ten Berges were out of the usual profile of those afflicted. Although anyone can be a carrier, TSD tends to run in the Jewish community, French Canadians of Southeast Quebec, Southern Louisiana Cajuns and Irish-Americans. A cure for Tay-Sachs may lead to a cure for many more diseases, affecting greater segments of the population. Related diseases include epilepsy, muscular dystrophy and Parkinson's disease. “A cure for TSD could be so far-reaching”, said John. “That is why fundraising efforts are so important.” To participate, donate or contribute contact John Ten Berge at 973-897-4338 or Hudson Farms at 973-398-4330. For more information on TSD, go to www.curetay-sachs.org.